LIVING WITH MCL

Or it's actually Motivational Deficiency Disorder, MoDeD (pronounced Mo-Dee-Dee) for short. In a report this week by Roy Moynihan who reports for the British Medical Journal Austrailian scientists may have come across the reason for extreme laziness . The condition is claimed to affect up to one in five Australians and is characterised by overwhelming and debilitating apathy. Neuroscientists at the University of Newcastle in Australia say that in severe cases motivational deficiency disorder can be fatal, because the condition reduces the motivation to breathe. Neurologist Leth Argos is part of the team that has identified the disorder, which can be diagnosed using a combination of positron emission tomography and low scores on a motivation rating scale, previously validated in elite athletes. "This disorder is poorly understood," Professor Argos told the BMJ. "It is underdiagnosed and undertreated." Who knew? Maybe I have MoDeD, from my attempts to become a...

In the past there has been a lot of discussion of fatigue on the various newsgroups I subscribe to. It is listed as a symptom of lymphoma and leukemia, so there is no doubt that many people experience it, but how do you know if it is really fatigue, or just a case of depression due to being diagnosed with a terminal illness? I have heard many complain of fatigue, to the extent they are unable to perform as they have in the past. They tire easily, and just have a general sense of malaise, even when blood counts are within normal ranges. Most attribute it to their disease. Others, such as myself, believe that in the absense of a low hemoglobin count, it is more psychological, that is to say, it is more likely a product of depression. I know, because I am tired all the time. At least that's my excuse. I seldom want to do anything anymore. I pretty much have to force myself to go for a bike ride, jog or even play golf sometimes. Heck, I even hate getting up in the morning to g...

It's been over a week since my last post of any consequence, so in case anyone was worried about me, I thought I'd better get something down in the old blog. Nothing has really changed too much for me, although I am happy that Daylight Savings Time is fast approaching, but there have been a few things of note that have occurred, which are worth putting down in writing. The first thing was great concern over my wife's MRI, which she was finally able to convince her PCP she needed, due to some persistant back pain. Something showed up on the T2 vertebrae, and somewhere else, that caused the doctor to order a CT scan, bone scan, some additional blood work and a referral to an oncologist. This wasn't good. Edie has always been the strong one in the family, knowing how to deal with life's little crises, not me. I can tell you how to forge jet engine parts and evaluate failures, but when it comes to real life problems, I am pretty much a wooss. Fortunately the blood ...

Sometimes it's good to to take your mind of the stressful things in life. This juggling performance by Chris Bliss , did just that for me. I hope you enjoy it as much as I did.

Not really, but it sounded like a good title. I may even use it again. I've been trying to write something down for the last couple of days about what's been going on, but everytime I start something, I change my mind. Maybe this time will be the charm. For some reason I've been pretty moody ever since Saturday, and I'm not exactly sure why. It's probably mostly due to the weather, which has been cold and windy, making golfing particularly difficult, but it could be any something else. I never know for sure. The week started out pretty decent, with lobster dinner Saturday night with some friends, and a very nice Laetitia Block R Pinot Noir. The lobsters were fresh, but I think the cook (one of our friends) steamed them too long, so they were a little tough. Still it was a good night out. Then Sunday I had a great 55 mile bike ride into the hills of Newport Beach, despite the fact that it was colder than normal, and the sun only shined for about the last half ...

Well, I met my new oncologist yesterday. He was very nice, but it was still slightly uncomfortable, as it was a new relationship. He examined me, checking for lymphnodes, and overall health, and then we talked about possible treatments down the road. He wasn't up on lymphoma's as much as I would have hoped, but he was familiar with the work done at MD Anderson with HyperCVAD and autologous transplants, which I expressed my reservations about, and he was up on the work being done with Velcade. I also expressed my reservations about the use of Doxorubicin in any chemo protocol we might agree upon, which did surprise him slightly, but I think he understood. I was trying to plant the seeds for initial treatment with rituxan or possibly a splenectomy. I mentioned the results of the use of high dose rituxan, i.e. 750mg/m 2 , but he was not familiar with that study. I neglected to get his opinion on splenectomy's, which I will discuss with him in about 6 weeks. I have paper...

Well, after reading my last post, I decided to stop publishing my SPHealthCare blog. I realized that hardly anybody was reading it, and there are a lot more competent people out there doing the same thing. Remember what I said about too much information not always being a good thing. Besides I came to realize just how much time it was taking out of my day. I will still comment on the other blogs, when I think I have something important to say, but I'll let the others do all the hard work. I'm just going to play more golf, and ride my bike.

After I received the results of that fateful blood test in March of 2002, I spent hours on the computer, searching the internet, trying to figure out what a high lymphocyte count could possibly represent. The first things I found related to leukemia or lymphoma, so I kept searching, hoping to find other, less serious possibilities. I found many reasons for a high lymphocyte count, but when the results of my retest came back the same, and the immunophenotyping of my blood came back with a diagnosis of Chronic Lymphocytic Leukemia (CLL), I knew searching for other possibilities was a waste of time. Of course I couldn't let other possibilites disappear from my mind completely, so I did keep searching, but I began to concentrate my efforts more into investigating CLL and other leukemias and lymphomas. I was very much surprised by the wealth of information available on the internet. I was also surprised to discover the number of different types of leukemias and lymphoma, and is even...